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Multiple symptoms - constant throat clearing, dry cough, reflux or virus?

Started by MAT51, March 26, 2017, 12:20:53 PM

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MAT51

I'm in a bit of a quandary. I still have four weeks until my appointment for connective tissue disease clinic with vascular med. Been on a trial of 2000mg Cellcept for 4 months.

Here is what I know I have wrong; Hashimoto's and Sjogren's with Pompholyx/ dishidrotic eczema, gerd, gastritis, chronic constipation, microscopic haematuria, hypertension, wear & tear arthritis, tiny splinter haemorrhages in nails, Onycholysis, apple shapeded overweight, Raynauds.

This is what think I have additionally wrong; some kind of vasculitis and very early stage kidney disease and sub clinical Atherosclerosis leading to possible angina. My mum died prematurely from severe Atherosclerosis/ undetected angina so I have family history. I have this awful heaviness in my arms (and to a lesser extent, legs),  but only when I'm lying down - that nerve conduction tests haven't explained. Such a weird, longstanding symptom. My gp has referred me for treadmill tests but the NHS waiting list is 8-9 months. Treadmill tests won't show anything - I walk up and down a steep hill daily. It's when lying down that my problems start. This has been getting very slowly worse for 4 years now.

I'm to have a nailfold capilliary test which may be a red herring as no longer think that the pain in my fingertips is Scleroderma because I now have clearly visible tiny transparent vesicles/ blisters on my fingertips and the tissue underneath isn't fibrous. My GP insists that the permanent red mottling under my skin of palms and finger pads shows something small vessel related is occurring and says these tiny bubbles on my tips can't be Pompholyx. I agree that I probably have secondary Raynauds and think something vascular is probably occurring secondary to my Sjogren's - but I'm certain these horrible painful tiny blisters are pompholyx eczema because I've had this coming and going all of my life so I recognise the unmistakeable signs. Pompholyx, as far as I know, isn't connective tissue related and is benign.

Apart from excruciating "glass splinter", superglue pain in finger tips my main problem is this constant need to clear my throat, which is sore and dry and tickly. I also have an intermittent dry cough which wakes me. I take a PPI when heartburn is bad and Ranitidine twice a day. But I'm aware of the hazards of living with silent reflux. Could be a cold I've caught off husband, could be post nasal drip, could be Sjogren's dryness of mouth. Nothing in my nose or sinuses that I'm aware of though. I feel my throat and oesophogus are both inflamed?  My main suspect is longstanding GERD.

So with so many diverse, chronic symptoms the big question I'm asking here is; which of these many and diverse ones should I focus on with the rheumy/ vascular medic (don't know if rheumy will attend or not)?
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!

MAT51

Ps I should add that I see my neurologist in same hospital in two weeks time about small fibre neuropathy and possible ganglionopathy. I'm increasingly convinced that my neuropathic issues are vascular/ Raynauds. Which symptoms should I emphasise to her do you think?
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!

SabbraCadabra

Quote from: MAT51 on March 26, 2017, 12:20:53 PM
...constant need to clear my throat, which is sore and dry and tickly. I also have an intermittent dry cough which wakes me. I take a PPI when heartburn is bad and Ranitidine twice a day. But I'm aware of the hazards of living with silent reflux. Could be a cold I've caught off husband, could be post nasal drip, could be Sjogren's dryness of mouth.

Could be LPR (a silent reflux), which I'm sure I've had for forever. Mine was far from a dry cough, but I definitely had tickling in my throat, post nasal drip, etc. I've read that it's caused from a bacteria imbalance in the stomach, where they feed on undigested carbs and release hydrogen gas, pushing up acids which irritate the throat. I started paying attention to it, and it definitely gets worse the more carbs I consume.

I imagine having Sjogren's doesn't help matters, since saliva has so many digestive enzymes in it. The web site I read recommended cutting way down on carbs for a while, taking something to promote stomach acid production (HCL supplements, a little wine with meals, or some diluted lemon juice), and getting more probiotics. YMMV, since you're on PPIs to limit acid production...I wish I could find the web site, but it looks like a spam site now.

Now I always make sure I have lemon juice in the fridge, and I just swig it straight...or if I'm in a bind, I'll chew some gum or find something to suck on, and that helps a little bit. I wish I knew about this stuff about 25 years ago.

MAT51

I think mine is caused by Sjogrens - it seems to be one of the more key symptoms often mentioned. I find too much lemon worsens my GERD and gastritis but it's a balancing act I realise. Thanks, Mat
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!

anita

Have you looked in your throat with a flashlight...to see if you have any thrush starting up?  of course, the annoying saliva from Sjogren's can cause the type of symptoms you describe, but this sounds as if it is new...as for why I suggest looking for white film on your tongue or deep in the back of your throat.

just one comment about your discomfort when laying down. I think you can rest a little easier knowing that the heart works the least when laying down (why when someone has a heart attack or attack of angina, they immediately have them lay down), so I doubt you have any stress of the heart causing your symptoms during these times (you say only happens when laying down).  Your family history though means that you always have to be on the lookout for signs of heart disease.

52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

DarleneB

DR IZABELLA WENTZ  just came out yesterday with a best seller called Hashimoto's Protocol. ...she is a pharmacist who researched and tweeted her diet and meds and supplements to help treat her hashimoto thyroiditis.
She also has a book called The Root Cause..that I am going to get.  She says there is a root cause to our autoimmune diseases.
Sjogrens, coronary artery spasms,arthritis, degenerative disc with spinal surgery,hashimoto, high cholesterol,low vit d ,insomnia

evoxac,restasis,tear duct plugs,asa,cardizem,toprol,fish oil,levothyroxine,,calcium with vit d,  irbesartan,restoril,est/prog/dhea/testos crea

MAT51

Quote from: anita on March 30, 2017, 06:31:49 PM
Have you looked in your throat with a flashlight...to see if you have any thrush starting up?  of course, the annoying saliva from Sjogren's can cause the type of symptoms you describe, but this sounds as if it is new...as for why I suggest looking for white film on your tongue or deep in the back of your throat.

just one comment about your discomfort when laying down. I think you can rest a little easier knowing that the heart works the least when laying down (why when someone has a heart attack or attack of angina, they immediately have them lay down), so I doubt you have any stress of the heart causing your symptoms during these times (you say only happens when laying down).  Your family history though means that you always have to be on the lookout for signs of heart disease.

The sore throat turned out to be a very bizarre cold Anita - fingertips still v sore too hence delayed reply. I say odd because it keeps starting up and making me wheeze, gag, eyes and sinuses smart in that head cold way and then disappear. Mouth dry and sore too

Meanwhile the Raynauds attacks keep on coming, the slightest breeze or drop in temperature acts as trigger. My finger tips are marginally less painful but only because I'm typing less. They are still blotchy white and red and grey under the skin and tips are covered in tiny Pompholyx blisters - which I think must be because this is my skin's way of reacting to these extreme systemic temperature swings i.e.burning or freezing. I've taken to wearing gloves and vest even though it's been mild and spring like here.

My finger pads and palms have been covered in this blotchy plum coloured marbling for ages now. It's not Livedo because it doesn't come and go but it does flare up more visibly when I have pins and needles. My tissue in soles, palms and finger pads looks normal and isn't fibrous - rather it is like memory foam - shiny imprints of anything I touch that remain for up to a minute and often these shiny wrinkles. All very bizarre!

Also I now have a red spotty non-itchy rash on my shins. But I don't feel terrible all the time so I'm hoping this is just Sjögren's flaring with secondary Raynauds and Pompholyx eczema as my longstanding default position when I'm unwell.

I think I'm worrying about some form of variant angina. You may know that my Mum died suddenly of undiagnosed angina which caused severe atherosclerosis. I may be being just paranoid but I did have a carotid duplex about 20 months ago and it showed early signs of atherosclerosis. I'm starting to wonder whether the presumed SFN and presumed autonomic dysfunction have all in fact been a red herring and the real culprit, as I was originally told by my old GP and a Vasculitis professor, are in fact symptoms of a vasospastic process.

I am at least very glad I've never agreed to mask the parasthesia and toothache pain in my legs with Prednisolone. I may be wrong about all this but at long last my symptoms are clearly visible and I've recorded the colour and tissue changes on my iPhone so can show the vascular medic if I don't have anything showing up on the day. I tend to overheat when I'm nervous and then get the opposite extreme to Raynauds i.e Erythromelagia.

Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!

MAT51

Quote from: DarleneB on March 30, 2017, 08:57:33 PM
DR IZABELLA WENTZ  just came out yesterday with a best seller called Hashimoto's Protocol. ...she is a pharmacist who researched and tweeted her diet and meds and supplements to help treat her hashimoto thyroiditis.
She also has a book called The Root Cause..that I am going to get.  She says there is a root cause to our autoimmune diseases.

Okay thanks - I hope you post once you've started and I'll see how you get on. I won't hold my breath as there have been many best seller "cures". I prefer it when breakthroughs come via the scientific research channels. "Best seller" to me spells false hope - but maybe, hopefully, I'll be wrong this time.
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!

irish

I have a dry cough (hacking and garping I call it) since the year 2000 and it worse in the evening and into the wee hours of the morning. It has ruined my sleep since 2000. I have post nasal drip of thick mucus plus it turns out that with my myasthenia gravis(autoimmune neurological disease) the loss of muscle strength and control in the muscles in back of my throat plus the muscles in hard palate and nasopharynx cause me to lose the ability to swallow normally. This combination makes for some really miserable nights. I do think that the think mucus loosens up over the course of the day related to fluid intake and eating. Thus by evening it is worse.

I would make sure to ask your neurologist about the neuro implications that could involve more than the ones you mentioned. We can have such complicated bodies that it is hard to get us diagnosed. Good luck to you. Irish

MAT51

Poor you Irish - I know exactly the kind of cough you describe and it is foul and so exhausting. I will think hard about what to say to the neurologist as I don't want her to discharge me from her list. The manifestations of vascular problems do show up in neurology too i think and symptoms overlap.
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!

quietdynamics

Even 'regular' people can wake-up with morning mouth.
"the amount of saliva that is produced in a healthy person per day; estimates range from 0.75 to 1.5 litres per day while it is generally accepted that during sleep the amount drops to nearly zero."
In the morning I do a pseudo face sauna with a warm cloth over my face (my nasal passage gets dry as a desert) and drink a full glass of water when I take meds. I do spend time in A.M. spitting up thick mucus, which subsides later. I do have gland damage.. so I am aware but, not particularly alarmed.

Our bedrooms are on second floor, during winter with heat on.. dry heat rises and air gets worse for me. Some people use a humidifier, I simply have a crock pot going all day next to bed to raise humidity level in bedroom. If we did not have carpeting I would even put a spider plant in room for air quality. Plus, I really do not have the strength to put a hook into the ceiling to hand plant.
I also take a pilocarpine before bedtime (it makes me sweaty so there is a trade off until that subsides and pilocarpine can make one urinate.). "Pilocarpine has been reported to increase airway resistance, bronchial smooth muscle tone, and bronchial secretions."

Instead of drops I use half a stick of sugarless gum (Polar Ice), chewing promotes saliva.. I tuck it in cheek on side and chew periodically when out and mouth feels dry.
Sjogren's Syndrome and Your Body
This autoimmune condition, which primarily affects the eyes and mouth, can involve other organs and systems.
http://webcache.googleusercontent.com/search?q=cache:ECaRRz8tlfkJ:www.arthritis.org/about-arthritis/types/sjogrens-syndrome/articles/sjogrens-syndrome-affects-body.php+&cd=20&hl=en&ct=clnk&gl=us

For those reading along; What Is Angina? https://www.nhlbi.nih.gov/health/health-topics/topics/angina
DH has Cornonory Heart Disease (Dx'd in his 40's). His father died in his 40's from heart attack and he was a doctor.. so we are very aware. DH has had severe leg/nerve damage due to this as well as as due to diabetes.. his 'Dad' genes are active vs. his 'Mom' genes, who @ 80+ is still working and just went on a trip to the Caribbean...lol. Just the way it goes. There are new meds and procedures which have benefited DH (we got a new doctor) .. he is going to be scheduled for one perhaps next week (par for the course these last 3 years.Spring seems to be his high maintenance time.) Then he will be back out on golf course and on motorcycle..lol.

DH was just switch to Plavix (Clopidogrel Bisulfate) (funny as in 2008 DH worked on this drug,he was a pharm research scientist,  as the patent was expiring). Previous med resulted, in his situation, with internal bleeding, eventual hospitalization with 3 blood transfusions.That was last spring 2016.. spring is his thing. Boot him up, then when stable clean, do what is necessary.... to get him back on golf course/motorcycle and our date night.

So it is great that you are on top of this and being monitored.





Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

MAT51

Thanks QuietD on helping me with both the swallowing and the possible atherosclerosis/ angina. The first I think is a mixture of sinus and gastritis with GERD plus Sjögren's (or maybe both relating to Sjögren's?). I find it hard to work out moisture levels in my room but I'm between two houses just now and both are not particularly modern, dry environments. I live in Scotland so usually have plenty of moisture floating about in the atmosphere. I seem to have a dry mouth going all the way down into my upper abdomen presently and also have chronic constipation.


I have been referred my my GP for stress testing in cardiology  but the waiting list is 9 months! I think I'm going to forget about possible angina for now but I do wonder if the horrible gastritis/ upper abdominal pain might not be related to this somehow. But it could also relate to the Cellcept or the disease itself - drying out, hardening tissue etc. But I guess I've had all these symptoms coming and going for years now and if it was anything critical it would have become apparent by now. So I'm going to wait to see my new rheumatologist on 25th of this month so only 3 weeks to go!
Mat
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!